Not handling this well..

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swg
swg Member Posts: 461
edited December 2017 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

I know I've posted a lot today. I feel like this is the only place that anyone understands what I'm going through.

My friends are well meaning but they have no idea, and I feel like everyone just expects me to be "brave." Tired of hearing "oh you're so brave."

I would love to hear "oh hey, can I help you do some research on what kind of plastic surgery you should consider for reconstruction? Or help you find a doctor in your health ins provider network who won't cost you a fortune? Or call some organizations for you to maybe help you get financial aid?"

But no..when I said I had no spoons on Facebook..I got JOKES. I tend to be impulsive, and it made me want to just take my FB post down.

I'm less worried about dying from this than I am going BROKE and losing my mind. And that is just as valid a concern, I think.


:(

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited October 2017

    I think those are definitely valid concerns! It's a super lot to try to educate yourself AND deal with a life altering diagnosis with the usual emotional toll AND figure out finances. I remember thinking (multiple times and sometimes still do) that I wished I didn't have to decide anything! Choice is a great thing, but where else in medicine do they leave it up to the patient?

    Is there a Nurse Navigator at your cancer center? Maybe she could help you figure out the insurance questions. Or there may be someone within your insurance group that helps to arrange things. A social worker at your center could also recommend some sources for help.

    And you'll probably have to educate your friends and family (in a nice way) about what is truly helpful. Not in the mood for jokes? That's okay. Maybe tomorrow. Right now, I need ...


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  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    Sorry you are struggling with family/friends being less than helpful. Many folks just don't quite know what to do or say for/to us. I agree about the nurse navigator! Also, is there a support group or therapist/social worker associated with your center? They can help with processing how to handle the changes in relationships and basically provide extra emotional support. ((hugs))

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2017

    Hi!

    My employer has a liaison with my health insurance company available to help with provider issues. In the past two years, I lost both my OB/GYN (retired) and medical oncologist (left the practice). The liaison was a nurse who helped me find new in-network providers in my area. Is that kind of service available with your insurance?

    I'm sorry that you don't feel like you're getting the support you need. Maybe, you could make a list of specific ways people can help, and bring them up when someone asks, "How can I help?". My biggest need during active treatment was help picking my daughter up from all of her athletic practices. A friend set up a "Lots-a-Helping Hands" page for me, and people would sign up to help with my daughter, dinner on Wednesday nights, and other specific needs. I really appreciated it.

    Best wishes!

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  • Alicethecat2
    Alicethecat2 Member Posts: 105
    edited October 2017

    Hello SWG

    I'm so sorry you're going through this.

    However, you've taken the first step in writing down how you think your friends could help you. This is good.

    Could you email them now and thank them for their concern and explain what they could practically do to help you?

    I had some great friends who helped me in many ways and they would haved loved to know what to do to help me. Maybe yours are like this too.

    By the way, you'll see we have a similar diagnosis. I'm just five years ahead of you.

    Alice

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  • swg
    swg Member Posts: 461
    edited October 2017

    Thanks, everybody.

    Alicethecat, I would love to chat with you sometime. I see you had a mastectomy only on one breast..did you do reconstruction?

    I'm struggling with that. I have 2 known cancer tumors in my right breast; the left had a suspicious area as shown by the MRI, but I was in too much pain from having a 2nd biopsy on the right, that I couldn't do a biopsy on the left.

    At first I was thinking, nm, I'll just get a bilateral mastectomy but now I feel I may have been too hasty.

    The radiologist who did my US guided biopsy said she didn't think the spot on the left was cancerous.

    Of course, if I talk to my surgeon about saving that breast, we'll for sure biopsy it, to make sure it really is clear.

    My concern is making the 2 sides even, if I do that.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited October 2017

    A lot of people may not understand your comment about spoons. EXPLAIN it to them, then tell them what you need.

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  • Icietla
    Icietla Member Posts: 1,265
    edited October 2017

    swg, are you a Spoonie? I am a Spoonie.

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  • swg
    swg Member Posts: 461
    edited October 2017

    What's a Spoonie?

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  • Icietla
    Icietla Member Posts: 1,265
    edited October 2017

    https://en.wikipedia.org/wiki/Spoon_theory

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  • swg
    swg Member Posts: 461
    edited October 2017

    LOL yeah I know about spoon theory..just wasn't sure what being a spoonie entailed :)

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  • Alicethecat2
    Alicethecat2 Member Posts: 105
    edited October 2017

    Hello SWG

    I did just have a mastectomy on one side but hope to have reconstruction in the future. After having side-effects after my chemo and rads reatment, I just wanted to feel well again. But some people sail through it. I was just unlucky.

    So, that said, I appreciate that you would like to appear as similar as possible on each side. This is just a personal view but I am pleased to still have my other breast. After reconstruction, it may not look exactly the same but will it be good enough for me? I think so.

    The joy of surviving a grade 3 tumour far outweighs any aesthetic considerations for me. Not ideal but good enough!

    Personally, I would have that biopsy on the left if your surgeon suggests it. A few moments of discomfort or pain would be a price worth paying for peace of mind or renewed vigour to crack on!

    By the way, has your surgeon discussed the possibility of having a lumpectomy? It was an option for me but I was so scared I opted for a mastectomy. Sometimes I regret my decision but I'm alive. Who knows which part of the treatment programme helped?

    I wish you all the best in dealing with this but it is doable.

    Alice

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  • Herculesmulligan
    Herculesmulligan Member Posts: 175
    edited October 2017

    swg......I had never heard about the spoon theory. That's an interesting idea. I'll need to think about that. Thanks for introducing me to that idea.

    As far as people making jokes when you posted "no spoons" on Facebook, I believe everyone here will agree that , now that you have breast cancer, you'll hear all kinds of inappropriate responses. Try not to take them to heart, and remember they make great stories for the "stupid comments" thread.

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  • swg
    swg Member Posts: 461
    edited October 2017

    Yeah..I'm a little tired already of the "at least you'll get new boobs!"

    But..I LIKE my boobs the way they are, if they weren't trying to kill me.

    They don't get that this isn't AUGMENTATION. ugh

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  • swg
    swg Member Posts: 461
    edited October 2017

    My surgeon says I am no longer a candidate for breast conserving surgery because of having 2 tumors on my right breast. They're not even in the same area :(

    I agree..I should probably go ahead with the biopsy on the left. Now that the right has healed a lot, I think I'm more up for it.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    swg, I also had my surgical options restricted due to multi-focal bc. I elected to keep one boob (although they did a lovely lift to make them match) and just have umx. Do get the information on what is going on with your left so that you can make an informed decision based on your preferences. We are all different and have different views about what is most important to us. It can be a difficult decision for some women, but information does seem to help. There is a thread "lx vs mx, why did you choose your route" that may help you think through all of the influencing factors: https://community.breastcancer.org/forum/68/topics/806074?page=8#idx_235

    ((hugs))

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  • Icietla
    Icietla Member Posts: 1,265
    edited October 2017

    16 hours ago Spookiesmom wrote:

    A lot of people may not understand your comment about spoons. EXPLAIN it to them, then tell them what you need.

    ------------

    Icietla writes:

    Yes, please! I am mystified.

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  • swg
    swg Member Posts: 461
    edited October 2017

    Thanks! I just got my pathology report for the 2nd tumor on the right today--same characteristics as the original. ER+/PR+, HE2-.

    13 mm

    IDC In Situ

    I made an appointment to get a biopsy on the left. Now that the 2nd biopsy on the right has healed and isn't painful, I think I can endure a THIRD biopsy. Pls keep your fingers crossed that it's not cancer.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    swg, IDC is never "in situ". DCIS is ductal carcinoma in situ. IDC is invasive ductal carcinoma. "in situ" means that it has NOT become invasive yet (i.e. hasn't left the duct).

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  • swg
    swg Member Posts: 461
    edited October 2017

    Hmm..my report is totally confusing then. I wonder if they found ANOTHER tumor...ugh

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  • swg
    swg Member Posts: 461
    edited October 2017

    Good lord, this makes me think my right breast is just a tumor producing machine, at this point :(

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  • swg
    swg Member Posts: 461
    edited October 2017

    I meet with my surgeon next Friday. I need to figure out what's up. Regardless, that breast has to go :(

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    Can you post exactly what your report said?

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  • swg
    swg Member Posts: 461
    edited October 2017

    It says under "Diagnosis"--

    --Invasive well differentiated ductal carcinoma and ductal carcinoma in situ, cribriform type with low nuclear grade and no necrosis

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  • Lisey
    Lisey Member Posts: 1,053
    edited October 2017

    SWG, that means you have IDC AND DCIS both in the tumor.

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  • swg
    swg Member Posts: 461
    edited October 2017

    You mean..I have an IDC AND a DCIS tumor, right? So basically 3 tumors in that breast.

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  • Lisey
    Lisey Member Posts: 1,053
    edited October 2017

    Tumors can have mixed IDC and DCIS.. You may just have 1 tumor but the IDC is intermingled with the DCIS.

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  • swg
    swg Member Posts: 461
    edited October 2017

    Ah, ok. I did see other ppl post about the same thing..now it makes more sense. Thanks.



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  • Icietla
    Icietla Member Posts: 1,265
    edited October 2017

    What about your having no spoons? Was that about teaspoons?

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  • Herculesmulligan
    Herculesmulligan Member Posts: 175
    edited October 2017

    https://en.wikipedia.org/wiki/Spoon_theory

    Here's is a link that explains the spoon comment.

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  • Stage2ire
    Stage2ire Member Posts: 82
    edited October 2017

    just googled spoon theory. I think I'm running low on spoons too! Pretty sure if I posted it on FB most people i know would ignore it. I think its hard for people to hear us say anything that isn't "fight talk". I get worn down by people saying your strong or brave. I'm terrified, tired, achy and suffering from insomnia!

    I've actually started being more direct when people ask how I am. If I'm tired, achy etc I say it. Not in a woe is me way, just matter of factly. Some people respond, some don't. Its hard, people aren't always able to hear the reality.

    I think if you have even one person you can trust with the reality of what you need or how you feel that will help. Not everyone is able to take it on. Its not a reflection on how they feel about you, just where they are at in their own heads and their own coping styles. Its hard cause as the patient we need them but not everyone is able to give us what we need. I try take a little from different people and some days I just accept that no one in my circle can possibly grasp where I'm at and try give them a by ball.

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